AnArizonanursinghomeoffersnewwaystocareforpeoplewithdementia.

MAY20,2013

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Beatitudesaimsatofferingdementiapatientspeoplewhohavetroublethinkingacomfortabledeclineinstead ofimposingamedicalmodelofcare,whichseekstodeferdeaththroughescalatinginterventions.Photographby PhillipToledano.

astsummer,FrederickC.Hayeswasadmitted totheadvanceddementiaunitatJewishHomeLifecare,onWest106thStreet.Itwas notaneasyarrival.Hayes,aveteranoftheKoreanWar,hadbeenatriallawyerforfive decades.Hewastall,and,thoughhewasinhisearlyeighties,heremainedphysically

imposing,andhehadaforcefuldispositionthathadservedhimwellinthecourtroom.One ofhisclosestfriendslikedtosaythatifthingswerepeacefulHayeswouldstartawar,butin warhedbethebestfriendyoucouldhave. Hayespracticedlawuntil2010,whenhewenttothehospitalforakneeoperation.While there,hewasgivenadiagnosisofAlzheimersdisease.Hiscombativetendencieshad becomemarkedlypronounced,andbeforearrivingatJewishHomehewasshuttledamong severalinstitutions.Nobodycouldmanagehisbehavior,evenafterHaldol,apowerful antipsychoticdrug,wasprescribed.Intheadvanceddementiaunit,heappearedtobein considerablediscomfort,butwhendoctorsthereaskedhimtocharacterizehispain,ona scaleofonetoten,heinsistedthathewasnotinpainatall.Still,somethingwasclearly wrong:helashedoutatthenursesaides,pushingthemawayandevenkickingthem.Ittook threeaidestogethimchanged. OnedayinSeptember,awomannamedTenaAlonzostoppedbyHayessroom.Alonzo, thedirectorofeducationandresearchattheBeatitudesCampus,aretirementcommunityin Phoenix,Arizona,foundHayeslyinginahospitalbedthathadbeenloweredtowithinafoot ofthefloor,tolessentheriskthathewouldhurthimselfbyfallingoutofit.Hisfacewas contortedintoagrimace,shelaterrecalled,andhewrithedandmoaned.Alonzo,whois fiftytwo,hasspentthepasttwentyeightyearsworkingwithdementiapatientsor,inher preferredlocution,withpeoplewhohavetroublethinking.Shecrouchednexttothebed, andspokeinaquiet,intimatetone.Imheretohelpyoudoyouhurtanywhere?she asked,movingherhandgentlyoverhischest,hisabdomen,hisarmsandlegs.Witheach touch,sheasked,Doyouhurthere?Whenherhandreachedhisbelly,themoaningceased andHayesspoketoher.Ihurtsobad,hesaid.Ipromiseyou,wearegoingtofixthis, Alonzosaid,andhethankedher. Shetoldme,Itwasheartbreaking,butthisgentlemanwastheretoteachussomething. Hewassaying,WhenIresist,itsnotthatIdontlikeyou,orIdontwantyourhelp.Its thatIcantstanditwhenyoumanipulatemybodyinthatway.Alonzoexplainedthatit canbeparticularlyhardforpeoplewithdementiatoidentifythesourceofpain,orto articulatetheirexperienceofit.Buthisbodytoldthestory.AsAlonzoputit,Allbehavior iscommunication. Hayeswasplacedonahigherdoseofpainmedication,andhegraduallybecamemore verbalhecouldnowrespond,forexample,whenaskedifhewascold.Healsolargely stoppedmakingthreateninggestures.Violenceandirascibilityarecommonamongpatients withdementia,butAlonzoarguesthattheyarenotinevitable.Norareotherbehaviorsthat weassociatewithnursinghomes:themanwhosepersistent,distressedeffortstoescapethe buildingmustbefoiledbyfrazzledstaffthewomanwhospendshoursslumpedbeforea television,shiftingconfusedlybetweendozingandwaking. MorethanfivemillionAmericanshaveAlzheimersorsimilarillnesses,andthatnumber isgrowingasthepopulationages.Withoutanyimmediateprospectofacure,advocacy

groupshavebegunpromotingwaystoofferpeoplewithdementiaacomfortabledecline insteadofimposingonthemamedicalmodelofcare,whichseekstodeferdeaththrough escalatinginterventions.TheGreenHouseProject,basedinArlington,Virginia,pushesfor thecreationofsmallgrouphomesinwhichmedicalcareislessintrusivethePioneer Network,basedinChicago,urgesreformssuchaslessrelianceonpsychotropic medications. ManyoftheseapproachesoverlapwiththemethodsoftheBeatitudesCampus,which, overthepastdecade,hasbecomeanincubatorforaholisticmodelofcare.Whenyouhave dementia,wecantchangethewayyouthink,butwecanchangethewayyoufeel,Alonzo said.AnnWyatt,theconsultantonresidentialcareattheNewYorkCitychapterofthe AlzheimersAssociation,callsBeatitudesamagicalplaceaphraserarelyusedto describeanursinghome.SheiscurrentlycordinatinganefforttoimplementtheBeatitudes approachinseveralNewYorkCityfacilities,includingJewishHome.Beatitudeshassort ofputthepiecestogether,shetoldme.Itallembarrassinglyandintuitivelymakes sense.

ntheadvanceddementiaunitatBeatitudes,theelevatorisblockedbyavelvetrope attachedtosilverstanchions.Visitorsmustunhooktheropetoproceed.Theropeismeant todissuadearesidentfromwanderingontoanelevatorandoutofthebuildingablack squareofcarpetinfrontoftheelevatorperformsthesamefunction,sincepeoplewith dementiahavebeenshowntobeunwillingtostepontosuchablackspace,takingittobea hole.Atothernursinghomes,exitsareoftenmarkedwithStopsigns,orblockedwiththe kindoffluorescentbannersthatpoliceusetocordonoffcrimescenes.Thevelvetropeat Beatitudesmakesasubtle,morepositivesuggestion:thatresidentsareensconcedinan exclusiveclub. Theunitisonthefourth,uppermostfloorofanineteensixtieseramedicalbuilding.Its residentsaremenandwomenwhocannolongerlivealonesafely:theymaynotremember thelocationofthebathroominthehousewheretheyhavelivedforfiftyyears,andtheymay havevirtuallylostthepowerofspeech.(Residentsonthelowerfloorshavelessadvanced dementia,orareundergoingrehabfor,say,astroke.)Acrossfromtheelevatorisalarge, sunnysittingroom,wherethenursesstationusedtobe.Wetookthatoutbecausethey deservedtherealestate,andwedidntneedit,Alonzotoldmeassheshowedmearound whatisalwaysreferredtoastheneighborhoodasemanticadjustmentmeanttosignal thatBeatitudesisaplacewhereresidentslive,ratherthananinstitutionwheretheyare confined. TherearenofixedbedtimesorrisinghoursatBeatitudes,andnoschedulesinsistingthat aidesmusthaveresidentsshoweredbefore10A.M.Residentsmaychoosewhen,andif,to bathe,providedthattheymaintainbasichygiene,andthereisnocompunctionamongstaff memberstogetuncoperativeresidentsspiffedupforvisitors.Insteadoftheintimidating

showerroomstypicalofnursinghomessafetyrailings,trusses,plasticcurtainsthe bathroomsatBeatitudesarespalike,withaquatiles,rubbedpinecabinetsfortowels,and frostedglassblocksshieldingtheshowerarea. Researchhasshownthatendorphinsreleasedduringapleasantexperiencehavea salutaryeffectonapersonwithdementiaevenaftertheexperienceisforgotten.Beatitudes triestoprovideresidentswithpleasurablemomentsthroughouttheday.Whenpeoplewith dementiabecomehungryorthirsty,theyareunlikelytolookforfoodordrink independently,oraskforhelpasaresult,theyoftenhavedifficultymaintainingtheir weight.OnedaywhenIvisited,aplateofcookiesandapitcheroflemonadehadbeenseton arollingsnackcartanattractivewoodencabinettoppedwithadecorativecloth.Staff membersperiodicallywalkaroundwithaplateoftinysandwichesorothersnacks,offering themlikehorsdoeuvresatacocktailparty. Breakfast,lunch,anddinnerareservedatconventionaltimes,butresidentscanhavea mealwhenevertheywish,evenattwointhemorning.Indiningareas,thetablesarecovered withwhitetablecloths,andfoodisservedonbrightcoloredFiestaware.Thisisanaesthetic choicebutalsoapracticalone,Alonzoexplained:thecontrastbetweenthevividdishand thewhiteclothishelpfultovisuallyimpairedresidents.Despitethetouchesofgracious livingatBeatitudes,theaveragecostofcareisroughlythesameasthecostatatypical nursinghome:justundereightyfivethousanddollars,notincludingmedications,withhalf ofthetotalgoingtowardstaffsalaries,andtenpercenttowardmeals. Mealstakeplacewithouttheambientsoundtrackcommoninrestaurants.Musical preferencesvarybetweenresidents,Alonzoexplained,andoneresidentsdispleasureat beingobligedtolistentoanotherschoicecanpromptavoidableconflicts.Alonzosown tasterunstoMetallica:WhenIhavedementia,dontplaycountrymusictomeIamgoing toslugyou,shetoldme.Alonzooftensays,WhenIhavedementiathisphrasing,she explains,isbasedonarationalcalculationofherodds,givenherfamilyhistory,butitalso underscoresthat,formostofus,mentaldeclineisinevitable. Thirtysevenpeopleliveintheadvanceddementianeighborhood,whoselayoutis traditional:twentyonebedrooms,mostofthemsharedbytworesidents,setonalong corridor.OnthefirstdayIvisited,severalresidentswerenappingintheirrooms.Aides encourageanyonewholookswearytoliedownfallingasleepinanarmchairora wheelchairoftencausesstiffnessandpain.Severalpeoplewereinasittingareathatfeatures atankoftropicalfish,andatelevisionsetwasturnedoff,asitusuallyis.Inmanynursing homes,televisionsentertainthestaffratherthantheresidents,whomayfindthe programmingtoostimulating,orhavetroubledistinguishingbetweenanonscreendrama andtheirownlives.(Talkshowsthatfeatureguestsyellingatoneanothercanprovoke violenceamongresidents.)Backin2001,thestaffatBeatitudeshadnotyetlearnedtoturn offthetelevision,andonSeptember11th,Alonzosaid,wehadpeoplecrawlingundertheir bedsandtryingtohideintheirclosets.ManyofthemfeltliketheywereinWorldWarTwo

again. Oneortworesidentswerewalkingalongthecorridor,whichispaintedinasequenceof hues:palebluegiveswaytoterracotta,andsoon.Thisschemehelpsresidentsfindtheir rooms,andprovidesamoresensualexperienceforpeoplewhoenjoywalkingbutwhose movementsarerestricted.Atoneendofthecorridorisasunroomequippedwithwind chimesandpatiofurnitureacatlikestobaskbythewindow.Oneofthethingsthatcreate comfortforpeoplewhohavetroublethinkingisspace,Alonzotoldme.Ifyouaretoo blockedin,youfeelfrightened.Thesunroomoverlooksabusystreetthehumoftraffic, filteredthroughdoubleglazedwindows,canbecalming,ascantherepetitivemotionofthe cars.Wehavemenwhoadorewatchingthecarsforhours,shesaid. AsAlonzointroducedmetovariousresidents,sheincludedshortdescriptionsthat capturedhowtheymighthavewishedtobedefinedinearlieryears:acommittedteacher,a greatmother.Theatmospherewasnotablycalm.Mostoften,whenyougoonaunitwith dementiayouaregoingtohearsomebodyyellingHelpme,orhittingtheirknees,or rocking,orbangingthetable,JedA.Levine,anexecutiveattheNewYorkCitychapterof theAlzheimersAssociation,said.LevinevisitedBeatitudeslastfall.Whatwasmost impressivewasnotwhatwasgoingonbutwhatwasntgoingontheabsenceofpalpable distress,hetoldme. Serenitycannotalwaysbemaintained.WhenIwasatBeatitudes,amancalledoutfor helpseveraltimesaccustomedtobeingwaitedonbyhiswife,hefrequentlybecame impatient.Abirdlikewomanwithwispy,strawberryblondhairandanabjectexpressionsat hunchedinherarmchair,heavingwithsobs.Thisresident,whowasonlymiddleaged,had frontallobedementia,aparticularlydevastatingformofimpairment.Thestaffdoctorhad tinkeredwithherpainmedication,andaideshadsoughttodistractherbywalkingwithher, tonoavail.Wevedonealltheregularthings,soweregoingtotrychocolate,toseeifthat helps,Alonzosaid.HersheysKissesareamainstayatBeatitudes,asarelollipops,onthe principlethatitishardtofeelverybadwhenthereissomethingtastyinyourmouthadults withdementiawillsometimessoothethemselvesbysucking,justastheydidwhentheywere babies. Alonzospokebrieflywiththebirdlikewoman,whoseemedconsoledAlonzotoldme thatthewomanappearstobelievesheisamemberofherfamily.Althoughitoncewas standardpracticeinnursinghomestoreorientresidentswhobecameconfusedaboutthe identitiesofstaffmembers,Alonzosaidthatitismorecomfortingtoresidentsifstaff membersplayalongwiththeirdelusions.Oneformerresident,aretireddentist,wasoften distractedfromincipientdistressbyafemalestaffmemberrequestingadentalexamshe thenopenedhermouth,sothathecouldpeerinside. AnotherresidenthoverednearAlonzo:aslender,uprightwomaninherearlyeighties whohadafaded,elegantbeauty.Sheseemedparticularlyhungryforattention,andwas overwhelmedwithjoywhenshereceivedit.Oh,myGod,youreperfectIloveyouso

much,shetoldAlonzo.Iloveyou,too,Alonzoreplied. WhenIsatinonastaffmeeting,Ilearnedthatthiswomanspentmostofeveryday walkingupanddownthecorridor.Therewasconcernthatsheneededadditionalpainkillers: shestartedoutwellinthemornings,but,bytheafternoon,anursereported,shelookslike sheswalkingoneggshells.Youcanseehertippytoeing.Fordecades,shehadworkedin retail,andshewasntgoingtostopwalkingjustbecauseshewasinadementiaunit.You cantellshesgotgreatlegs,anotherstaffmemberobserved. Ispentsometimeonedaywalkingalongthecorridorwiththiswoman,intothesunroom andoutofitagain.Herfacebrightenedatthecompany,andshewaseagertotalk,even whenhersideoftheconversationdevolvedintosingsongnonsense.Sometimesshestopped toshimmyforamoment,andIcouldimaginewhatafiguresheoncemusthavecutata dance.Beinginhercompanytriggeredmemoriesofbeingachildalongsidemy grandmother,nowlongdead.IrecalledtheatalossforwordsfeelingthatIusedto experiencewithher,evenasshemademefeelheldwithinasphereofaffection.This womanspowersofcognitionwerelimited,buthercapacitytoexperienceemotionseemed unimpaired,andshedemandedengagementinthewaythatasmallchilddoes:itmadeno moresensetoresistherimpulsetowardintimacythanitwouldtowithholdasmilefroma baby.WhenshegraspedmyhandsandtoldmethatIwasperfect,Itoldherthatshewas perfect,too.

heprinciplesunderlyingBeatitudeswerederivedfromtheworkofThomasKitwood,a Britishsocialpsychologistwhodiedinthelatenineteennineties.Kitwoodtrainedfor thepriesthoodandworkedasachemistryteacher,inEnglandandinUganda,before returningtoBradford,England,wherehefoundedtheBradfordDementiaGroup,which promotedpersoncenteredcare.Inhislandmarkwork,DementiaReconsidered:The PersonComesFirst,publishedin1997,Kitwoodinsistedthatpeoplewithdementia,rather thanbeingseenasdebilitated,shouldbeembracedforwhattheycanteachthecognitively intact.Suchpeople,hewrote,inviteustoreturntoaspectsofourbeingthataremucholder inevolutionaryterms:moreintunewiththebodyanditsfunctions,closertothelifeof instinct.Kitwoodarguedthat,inadvancedWesternsocieties,whereasenseofcommunity isoftenweak,theevidentfrailtyofpeoplewithdementiageneratesfearthisuneaseis sociallymanagedbyturningthedementedintononpersons,whoarewarehousedinnursing homesandpathologizedwithtermslikeresistingcare.Theproblem,Kitwoodconcluded, isnotthatofchangingpeoplewithdementia,orofmanagingtheirbehavioritisthatof movingbeyondourownanxietiesanddefences,sothattruemeetingcanoccur,andlife givingrelationshipscangrow.Onlyinthiswaycouldthepersonhoodofpeoplewith dementiabeconserved,evenastheirintellectiondeclined. KitwoodsworkhasbeenparticularlyinfluentialinEurope.InEngland,PrimeMinister DavidCameronisleadingacampaign,theDementiaChallenge,thataimsatproviding

suffererswiththeservicesandsupporttheyneed.AndtheBelgiancityofBrugesrecently declareditselfdementiafriendly.Storescandisplayaknottedhandkerchieftoindicate thattheywelcomecustomerswhohavetroublethinking:clerksaretrainedtoanticipatethat ashoppermayhaveproblemsrememberingwhatshewantedtobuy. AlonzodidgraduateworkinpsychologyatNorthernArizonaUniversity,butshedidnot readKitwoodsworkuntilshearrivedattheBeatitudesCampus,asasocialworker,in1998. Itblewmymind,shetoldme.Thecampushadbeenfounded,inthenineteensixties,by theChurchoftheBeatitudes,aprogressiveProtestantcongregationinPhoenix,andit followedtheprevailingpracticesofthetime:usinglaprestraintsanddispensingThorazine bythebottleful.KarenMitchell,whoisnowthenursingdirector,andwhohasworkedat Beatitudesforthirtyyears,recalls,Wethoughtitwastherightthingtodo.Wehadallthese myths:everyonehadtobeonaschedule,forourconvenience,inaway.Andeventhoughit wasfortherightreasonsmakeresidentsclean,makethemhappyitwasntmakingthem happy. Nursinghomes,whetherpublicorprivate,mustfollowdetailedfederalandstate regulations.TheNewYorkStatemanualexceedssixhundredpages,coveringeverything fromdietaryservicestotheuseofphysicalrestraints,anditmakesprecisestipulations:each resident,forexample,isentitledtoatleasteightysquarefeetofbedroomspace.Such regulationsareintendedtoprotecttheelderly,buttheycanalsohinderinnovationonthe partofstaff.(NewYorkStateregulationscallforeachresidenttobesuppliedwitha separatebedofpropersizeandheightatBeatitudes,onemaleresidentsbedhasbeen replacedbyarecliningarmchair,toaccommodatethewayhepreferstosleep.)Changesto theruleshappenslowly.Untilthenineteeneighties,itwasconsideredeffectiveandhumane tomanageunrulyresidentswithveststrapsandotherrestraints.Activistsledacampaign thatlargelyeliminatedsuchrestraints,butthiswasfollowedbyanincreaseintheuseof chemicalrestraints. Today,psychotropicdrugsareregularlyusedtosedatepeoplewithdementiainto compliance,andnursinghomeresidentswhohavenodiagnosisofmentalillnessaregiven offlabelprescriptionsforHaldol,Seroquel,andotherantipsychotics.Thesedrugswere developedforthetreatmentofconditionssuchasschizophrenia,notdementia,andare generallyintendedforyoung,robustpatientswhensuchmedicationsaregiventothefrail andtheelderly,theyinducealethargythatcanmasksymptomsofotherafflictions. Antipsychoticsarealsoexpensive:aSeroquelprescriptioncancostthreehundreddollarsa month.Overthepastyear,theCenterforMedicareandMedicaidServices,orC.M.S.,has madeeffortstotracktheuseofantipsychoticsinnursinghomesandreduceitAlonzo servesonanadvisorypanelconsideringtheissue.AliceBonner,adirectorofC.M.S.,told me,Peoplearestartingtorealizethat,withsomecreativityandcuriosity,wecanfigureout otherwaysoftakingcareofpeoplewithdementia.Therereallymustbeaverycompelling reasontousethesemedications.

AtBeatitudes,antipsychoticsareprescribedwhenaresidentsuffersfromapriormental conditionschizophrenicsgetdementia,tooorwhenaresidentwhoisveryclosetodeath hasdistressinghallucinations.Butinmostcaseseveryeffortismadetoreducedosagesor eliminatethedrugaltogether,especiallywithresidentswhosedifficultiesmaybemore effectivelyaddressedwithpainmedication.Someresidentsaregivenopioids,butmanyof themtakelittlemorethanTylenol. Residentswhoarrivewithantipsychoticprescriptionsaregraduallyweanedoffthem. OnesuchpersonImetwasGisaDeBiasio,aninetythreeyearoldresidentwho,whenI encounteredher,washeartilysingingpopsongsfromthenineteenfiftieswithKathyDeyo, theactivitiescordinator.YourememberthewordsbetterthanIdo,Deyotoldher, accurately.DeBiasiohadarrivedatBeatitudesayearandahalfearlier,witharaftof prescriptions,afterabriefstayatanothernursinghome.Herdaughterinlaw,Maryjane DeBiasio,toldme,Theydruggedhersomuchthatshewasunrecognizabletous.Maribeth Gallagher,adirectoratHospiceoftheValley,aservicethatworksintandemwith Beatitudes,saidofDeBiasio,Fromtheirperspective,shewasbeingdisruptive,combative, aggressive,paranoid.ShesborninSicily,shespentherwholelifeinBrooklyn,andshe comestoPhoenixandissittingnexttopeoplefromafarminIowa.Soareyousurprisedthat theymightbesayingshesguarded,shesaggressive?Theywantedmetochangeher behaviors.AsicilianafromBrooklynthereisnomedicationintheworldthatisgoingto changewhosheis!DeBiasiostoppedtakingpsychotropicmedication. AsignificantpartoftheworkatBeatitudesinvolveshelpingfamilymembers comprehendthatdementiaisaninexorable,terminaldisease.Understandably,theytendto graspataresidentsseemingmomentsoflucidity.Butfamilymembersareencouragedto embracetheirparentorspousesalteredstate.PeggyMullan,itsC.E.O.,toldmethatshed recentlytalkedtoaresidentsdaughterwhowasupsetthathermothernowmistookherfor herownsister.Mullanhadurgedhertoconsiderthatherimpairedmothermightfindthis comfortingassheexplainedtome,IhaveasisterlivinginNorthDakota,andIwouldgive myeyeteethtositandhaveaconversationwithher.MaryjaneDeBiasiotoldmethatGisa nolongerrecognizedherchildrenorgrandchildren.Thereisnoconnection,shesaid.But shestillmakesuslaugh,and,becauseofthat,westillfeelthatwehaveaconnectionwith her.AndMaryjanecouldseethevestigesofGisaspersonalitywhenshedidhernails,she noted,ifIhurtheralittlebit,shewillgivemealooksheisveryspunkyandnotafraidto saywhatsonhermind.(GisadiednotlongafterImether.) IttookseveralyearsandachangeinadministrationforthestaffatBeatitudestofully adoptKitwoodsprinciples.OneofthefirstthingsAlonzodid,in1998,wastoaskanaide whowasborninVietnamtotalktostaffmembersinhernativetongue.Itwastheonly languageIcouldfindthatnobodyelsecouldspeak,Alonzorecalled.Sowehadhertellus verysweetly,inVietnamese,whatshewantedustodo,andwecouldntunderstandher. Thestaffhadtobecomeattunedtothewomansnonverbalcues.

Onanotheroccasion,Alonzounderwentapublicbedbath,infrontoftheentirestaff,of twentyseven.Shedidntallowherselftomoveherlimbs,andbehavedasifconfused. Afterward,shewasabletodescribethenatureofherdiscomfort,andstaffmembers analyzedtheirownactivityinlightofit.Letmetellyou,itsuckeditwasincredibly uncomfortable,shetoldme.Staffmembersthenspoonedfoodintooneanothersmouths andbrushedoneanothersteeth,inordertobeonthereceivingendofactivitiesthatthey performedfortheirchargeseveryday.Youcanfeelhowthreateningitistohave somethingtouchyourmouthwhenyouhavenotbroughtittoyourownlips,shesaid.This feelingiscaptured,withexcruciatingcandor,intherecentfilmAmour,whenawoman withdementiaisproddedbyherhusbandtodrinkfromacupofwater. Inthemostradicalexperiment,thestaffworeadultdiapers.Thatwaskindoflife changingforeverybodyinvolved,Alonzotoldme.Weallrecognizedjusthow uncomfortableitwastositinawetbrief.Someofourfrontlinestaff,whoreallywantedto knowhowbadthatfelt,didnotchangethemforacoupleofhours.Previously,most residentshadbeendressedindiapers,astheytendtobeinamajorityofnursinghomes.Not longafterward,aidesdecidedtostopthepracticewithmostresidents,insteadtakingthemto thebathroomfifteenortwentyminutesaftermealtimes.Thismaderesidentshappierwhile makingthestaffsjobseasier,becausetheynolongerhadtochangepeoplewhowere agitated. Astorageclosetoncefilledwithdiapershasbecomeanookwhereresidentsorvisitors cansitthedcorcanbechanged,accordingtotheinterestsoftheresidents.WhenIvisited, itwassetupasalibrary,withanarmchair,books,andahandsome,oldfashionedclock. Earlier,ithadbeenacraftsarea,withasewingmachine,scrapsoffabric,andcontainersfull ofbuttons.Ithasalsoresembledanursery,withacrib,avintagehighchair,arockingchair, andababydoll.Alonzosaid,Wehadalotofpeoplewhothoughttheywereyoung mothers. Beatitudesiseffectiveinnosmallpartbecausethepeoplewhoworkdirectlywith residentsinitiatefreshapproaches.Everyoneonthestaff,fromconsultingdoctorsto housekeepers,isexpectedtoputtheneedsofresidentsfirst.Ittooktimeforsomenursesand aidestoadjusttothenewthinking.KarenMitchell,thenursingdirector,said,Isawone residentwalkuptoanotherpersonsittinginachair,andputherarmout,andIjumpedup frommychairandrandownthehall,becauseIthoughtforsurethattheyweregoingtohave analtercation.Instead,sheputherarmaroundher,andwasconsolingher. Innursinghomes,staffareheldresponsibleifaresidentfallssincetheyarewatching overseveralpeopleatonce,thereisanunderstandabletendencytoinsistthatpeopleremain sittingdown,insteadofalteringtheenvironmenttomakefallslesslikely,orusingphysical therapytostrengthenlegs.Mitchelltoldme,Wehavetogiveresidentstherighttofall.I sawoneresidenttotteringdownthecorridortowardthesittingroom,carryingafoldout tablethatwasstillsetwiththedishesshedusedforlunch.Ratherthanrushtograbthetable

fromherhands,KathyDeyowatchedheradvanceforaminute,thenapproachedherslowly andsuggestedthatshetakeabreak.ThenDeyoaskedifshemighttakethetableandstowit awayallwithoutchallengingtheresidentscompetency.

astfall,TenaAlonzocametoManhattananddeliveredatalktoanaudienceofninety dementiacareworkers.Sheusedafavoritemetaphortodescribetheprogressive declineofapersonwithdementia,fromforgettingkeystobecomingunabletospeak.I thinkofitlikebeingonthereceivingendofareallybadcellphonecallmaybeaword getsthrough,butmaybeitdoesnt,shesaid.Forthem,thecallneverends. Atonepoint,sheaskedtheaudience,Whatarethethingsthatyouexperienceevery day?Shestartedenumeratingtheirresponses:Thereshitting.Verbalabuse.Poundingon thenursesstation.Shoppingtakingfromotherresidents.Hoarding.Disrobing. Smearing.Falselyaccusingthestaff.Audiencememberskeptcontributing.Tryingto escape,onesaid.Wanderingthehallsatnight!anothercalledout.Voiceschimedinfrom allovertheroom,amidtherisinglaughterofrecognition:IneedmyMetrocard! Everyonescrazy!ImadecentmanIdontsleepwithotherwomen!Imgoingto shootyou! AlonzosspeechwaspartofadaylongtrainingsessionforstaffmembersfromJewish Homeandthetwoothernursinghomesthatarelearninghowtoinstitutethepracticesof Beatitudes:theIsabellaGeriatricCenter,inWashingtonHeights,andtheCobbleHillHealth Center,inBrooklyn.Theprogram,whichhasabudgetofsixhundredandfiftythousand dollars,isexpectedtolastthirtymonths,andwillincludearesearchelementtogaugethe successofspecificprotocols.Accordingtoapreliminary2008studythatAlonzoco authoredwithCarolO.Long,adirectorofpalliativecareatBeatitudes,theirapproach reduceddrugcostsbyafifthinaddition,residentsmaintainedtheirweightwithouta dependenceondietarysupplements.Theirdatasetwaslimited,however,andmorestudies arenecessary. TheNewYorkCitychapteroftheAlzheimersAssociationselectedthethreenursing homesintheprogrampreciselybecausetheirstaffswerereceptivetochange.TonyLewis, theC.E.O.ofCobbleHill,doesnotneedtobeintroducedtothenotionthatbehaviorequals communication.Hetoldmeofoneresident,aformerlongshoreman,whobecameenragedat mealtimesafterstafflearnedthat,astheheadofhisfamily,hehadalwaysbeenservedfirst, theybegangivinghimhismealsbeforeotherresidents,andtheoutburstsstopped.Evenso, theseinstitutionssometimesdothingsthatwouldnotpassmusteratBeatitudes.Iwasatthe IsabellaGeriatricCenteronthemorningoftheNewtownschoolshootings,andnobody thoughttoturnoffthetelevisionnews. Fortheretrainingprogram,keystaffmembershavetravelledtoArizonatoobserve Beatitudes,andsinceDecembereachinstitutionhasheldweeklymeetingstodecidehow newapproachesmightbeadoptedinNewYork.Suggestionsmadebythehousekeeping

staffareaccordedasmuchimportanceasthosemadebythenursingdirector.Atone meetingatJewishHome,anursingassistantwhohadvisitedPhoenixwasparticularlyeager toemulatetheBeatitudessnackcart,andtostocktherefrigeratorcurrentlyfilledwith unappetizingdietarysupplementswithyogurtandothersoftfoods. DeirdreDownes,thecorporatedirectorofsocialworkinitiativesatJewishHome,told methattheprogramhadinspiredsubtlebutsignificantchanges:amongotherthings,aides hadstoppedtalkingaboutresidentsresistingcare.Downestookmearoundtheadvanced dementiaunitanddiscussedpossiblechangestothedcor,whichwasplainlyunwelcoming, withcoldtiledfloorsanddrabpaint.Inthelargedayroom,aTVsatatopacabinetwhose doorhunglooseonitshinge.Downeshopedthattheroommightbereconfiguredintomore pleasing,smallerspacessheshowedmealittleroomthatiscurrentlyusedasastorage spaceandaboltholeforstaff,andsaidthatitshouldbeturnedovertotheresidents.They deservenicespaces,shesaid.Therewasalimitedbudgetforrenovation,however:Jewish Homeplanstoreplaceitscurrentfacility,whichisinanunprepossessinghospitallike building,withonethatfollowsthepreceptsoftheGreenHouseProjectmovement.Thenew facilitywillfeatureshared,selfcontainedapartments,andwillevokeacollegedormitory morethanahospitalward.Thegoalistoallowresidentstoageinplace,caredforbystaff butnotoverwhelmedbytheirpresence. Inacorridornearthenursesstation,Downespassedbyamanwhowasrecliningina geriatricchair.Hello,Mr.Hayes,shesaid.Youarelookingwonderful.Hegavehera waterybutdistinctsmile.FrederickHayeswasunrecognizablefromthemanwhohad arrivedattheunit,kickingandscreaming,severalmonthsearlier.Byobservinghisbehavior carefully,nursesaideshadlearnedthathelikedtowatchtelevisionasadistractionwhilehe wasbeingchangedorwashed,andthatitwasimportantnottoblockhisviewoftheset.Now thatHayeswasreceivingenoughpainmedication,heenjoyeditwhentheaidestalkedto him,andevenrespondedtotheirjokes.Hissontoldme,Theyunderstandhowtogetalong withhim.Theyknownottopushtoomuch.Hayesparticularlyenjoyedbeing complimented:aidestellhimheisahandsomeman,which,inspiteofeverything,hestillis.

nacelebratedpassageofGulliversTravels,JonathanSwiftdescribestheStruldbruggs theimmortalresidentsofthenationofLuggnagg.Gulliver,uponhearingoftheir existence,isthrilledheimaginesthemtoberepositoriesofwisdom,andaskstospendtime intheircompany.Heisquicklysetright:Struldbruggsgrowold,justasmortalsdo,and suffertheusualinfirmitiesofage,alongwithothersspecifictotheircondition.Swiftwrites:

TheywerenotonlyOpinionative,Peevish,Covetous,Morose,Vain,Talkative,butuncapableofFriendship,anddeadtoallnatural Affection....TheyhavenoRemembranceofanythingbutwhattheylearnedandobservedintheirYouthandmiddleAge,andeventhatis veryimperfect.AndfortheTruthorParticularsofanyFact,itissafertodependoncommonTraditionsthanupontheirbestRecollections. TheleastmiserableamongthemappeartobethosewhoturntoDotage,andentirelylosetheirUnderstandingsthesemeetwithmorePity andAssistance,becausetheywantmanybadQualitieswhichaboundinothers.

Swift,writingin1726,wasapparentlydescribingdementia,amedicaltermnotgenerally inuseuntilthenineteenthcentury.EveryMandesiredtoputoffDeathsometimelonger, hewrites.ButtheconditionoftheStruldbruggsisevenmoregruesomethandeath.No TyrantcouldinventaDeathintowhichIwouldnotrunwithPleasurefromsuchaLife, Gulliverreports.Todaysmedicaladvancesmeanthatdeathiseasiertoputoffthanitwasin Swiftstime.But,liketheStruldbruggs,peoplewithdementiainvitethosewhocareforthem toweighthevalueofprolonginglife,evenasthehealthcaresystemsinwhichtheyare enmeshedattempttosustainthemwithinvasiveprocedures. Practitionersofpalliativecarearguethatsucheffortsareoftenpointless,andmay reducestillfurtheranindividualsalreadydiminishedqualityoflife.Atfirstglance,itmay lookrecklesstogiveicecreamtoanelderlypersonwhohasdiabetesaconditionthat affectsoneoutofsixnursinghomeresidents.Butgivingpleasurablefoodstopeoplewith dementiacanhelpavoidconflict,andcanprovideameasureofsatisfaction.Theglassof juiceisnotgoingtokillthem,AnnWyatt,oftheAlzheimersAssociation,toldme.And thoughcaregiversforpeoplewithdementiarefrainfromsayingsuchathingaloudwould itbesobadifitdid?Wecantchangetheinevitable,Wyattsaid. DeathisaconstantpresenceinnursinghomeswhenIvisitedBeatitudes,oneresident wasreceivingwhatareknownaseleventhhourservices.Hospiceworkersmadesurethat someonewasalwaysatherbedside,andplayedaCDofsquaredancingmusicthather husbandsaidshehadloved.Often,theadvanceddementiaunit,withitspervasivequietand itsslowmoving,kindlystaff,seemedlikeananteroomtoanotherrealm,filledwithpeople inastateofsuspendedanticipation.Alonzotoldmethatsheregardedtheresidentsasbeing closertothehigherbeing.Thisiswhotheyare:real,honest,andsometimesraw.Thereis noabilitytoreason,ortocoverupwhoyoureallyare.Andso,formuchofthetime,yousee thelovelinessofthesoulitisbareforeveryonetoacknowledge. Valorizingdementiaasahigherstateofbeingmaystrikemanypeopleasbizarre,and suchsentimentsareunlikelytocomfortthechildrenorpartnersofpeoplewhomustendure livinginastateofalmostperpetualconfusion.Yetoursocietydoestendtoprizecognition andexecutivefunctionattheexpenseofotheressentialhumanqualities:sensuality, pleasure,intimacy.Forpeoplewhocannolongerthinkclearly,alifeofsmallsensory pleasuresisaconsiderableachievement.IwatchedoneBeatitudesresidentapproachAlonzo withanecstaticsmilewhenAlonzobenttokissheronthecheek,MaribethGallagher,who wasstandingnearby,saidoftheresident,Shejustassumesthatwearegoingtokissherand loveher.Wouldntyoulovetoliveinaworldlikethat?Notatthepriceofmyintellectual facultiesbut,underthecircumstances,itseemedpreferabletoanyavailablealternative. NotlongafterIvisitedBeatitudes,Isawmymotherinlaw,whointhepastfewyearshas undergoneaswiftdeclineintodementia.ShelivesinaretirementhomeoutsideWashington. ForthedozenyearsIhaveknownher,shehasbeenananxious,extraordinarilywell meaningwoman,withadeeplyconcealedveinofimpatience.Herdementiaseemstohave

amplifiedthesecharacteristics,andwhenIvisither,whichismuchtooinfrequently,Iam dismayedbymyowndiscomfort,andbymyclumsyattemptstocommunicatewithsomeone whocannolongerhaveaconversation. Insomeways,theretirementhomeresemblesapleasanthotel,withaspaciousatrium andacheerfuldeckwithflowerfilledplanters,whicharetendedbyresidentsofthe assistedlivingwingofthefacility.Buttoreachthedementiaunityoumustdescendinan elevatorandopenalockeddoorthewindowslookoutonbankedgrassvergesthatriseto parkingspacesabove.Thehuboftheunitisthenursesstation,whichisnexttoadining areaandalivingroom.Likemanywellregardednursinghomes,itsadecentplacewith caringstaff,runbyanadministrationwiththebestofintentionsbut,asaresultofingrained habits,italsoadherestothekindofrigidschedules,anddeliversthekindofmedical treatments,thatBeatitudeshasleftbehind. MyvisitwasclosetoChristmas,andIbroughtagiftofhandcream,withtheplanof givingmymotherinlawahandmassage,asIhadseenaidesdoinArizona.Butthescent wastoostrongforher,andIwasembarrassedatthefailureofmyselfconsciousefforttobe beatific.ThenIkneltbyherwheelchairandbegansingingtraditionalcarolsthesamethat shedsungasagirl,eightyyearsearlier,inCooperstown,NewYorkandshewas transparentlydelighted,murmuringalongwithOCome,AllYeFaithful,andtappingher footvigorouslytoWeWishYouaMerryChristmas.Itwasthemostsatisfyingmomentwe havespenttogetherforalongtimeforbothofusandwhenIhavedementiaIhopethat someonewillsingthesamesongstome.

neresidentImetatBeatitudes,NancyKayBeck,oftenseemedagitated,withafretful lookabouther.Upuntilayearorsoearlier,shehadbeenlivingindependently,but thathadbecomeunsustainable:shehadbeguncallingherdaughterseventyoreightytimesa day,forgettingthatshedmadeanyearliercalls. BeckwasangryaboutbeingplacedatBeatitudes.Sherepeatedlybeggedherdaughterto takeherhome,andinsistedtostaffmembersthatshewantedtoleave.Notlongafter arriving,shestruckuparomanticrelationshipwithamaleresident.Itisanotuncommon occurrenceamongpeoplewithdementiatocoupleup,eveniftheirinfirmitieslimitthe relationshiptohandholdingorapeckonthecheek.Ifonehasbeenaccustomedtohavinga husbandorwife,butcannolongerrecognizehimorher,itmakesintuitivesensetoputa fellowresidentintheplaceofaspouse.Wearewiredforpersonalintimacy,anditcangive usgreatpleasureandsolace,Alonzotoldme.Ifyouhavesharedabedforsixtyyears,to sleepalonecanbedisconcertingatBeatitudes,residentsaresometimesgivenabodypillow tosimulatethesleepingformofaspouse. Butcoupledresidentscanalsocauseeachotherdistress.Beckandherfriendspenttheir daysplottingescape.Theywouldapproachanurseandasktowithdrawtheirmoney,asif theywereatabank,onlytobetoldthatthebankwasclosedandtocomebacktomorrow.

ThisritualheightenedBecksanxiety.Afterhercompaniondied,Beckbecamecalmershe didnotseemtonoticethathewasgone,orrememberthathehadeverbeenthere.Yetshe remainedconvincedthatsheshouldnotbewhereshewas. Beforeherretirement,someyearsearlier,Beckhadworkedintheadministrativeoffices ofacenterforbehavioralhealth,wherepatientswithmentalillnessescameforhelpwith theirinsuranceclaims.Shehadlikedherjob,andhadenjoyedworkingwiththispopulation, andwhenImethershespokeofotherBeatitudesresidentsasifshewereworkingamong them,ratherthanlivingwiththem. Itrytokeeptrackofthemtheyrelikemykids,shetoldmeoneday,aswesatinthe sunroom,watchingtheformerretailclerkwanderingby.Itsoddwhatthisdiseasedoesto you.Sheofferedananalysisofthepassingresidentthatservedasaslightlyconfused accountofherowncondition.Youwanthertogetoutofthatthingtomoveon,have somelife,shesaid.Youdontwanttohopethatsheisgoingtohaveanotherbutyou knowshesgoingto. Freefloatinganxietyischaracteristicofdementia,andhonoringthepersonhoodof residents,asThomasKitwoodrecommended,alsomeansacknowledgingtheirdistress. GillianHamilton,themedicaldirectorofBeatitudes,toldmethatBeck,whoisphysically sturdierthanmostoftheresidents,isherbiggestchallenge.Shejustwantstogohome, Hamiltonsaid.Ivetriedmanydifferentmedications.Ivetriedsedatingher.AndIjust cantgetanywhere.Iwouldloveasolutionforher,butitsnotamedicalsolution.Andwe haventcomeupwithsomething.Often,Hamiltontoldme,aresidentsdistressabatesas thediseaseprogressesthemostdifficulttimeistheperiodduringwhichapersonwith dementiarecognizesthatsomethingveryunwelcomeishappening,butisunableto understandit.Hamiltontoldmethat,withBeck,theywouldjusthavetowaitoutthisperiod. Shellbebetterwhenshesworse,Hamiltonsaid. Notlongago,IcalledTenaAlonzo,andaskedaftersomeoftheresidentsIhadmet.She toldmethatthewomanwhowalkedthecorridortheladywiththegreatlegshadgone intoadecline,andthatherfamilywasatherbedside.Iwassurprisedtohearthis:shehad seemedvital,evensprightlybuthergirlishmannerhadmaskedtheextentofherfrailty.She diedwithinafewdays.Shewassinginganddancingupuntilthedaybeforeshedied, Alonzotoldmelater.Ifyouhavegottogo,thatsagoodwaytogo.
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